August 2016 Newsletter

 

 
 
Jett Foundation is lighting up Times Square this summer in an effort to build awareness for Duchenne.  Help us spread the word - participate in our photo contest.

Jett Foundation is also making a SPLASH this summer with Camp Promise. When you give to Jett Foundation, you send kids to camp and give them the gift of summertime fun!  Camp Promise is free for all campers. Jett Foundation is funding and running three weeks of camp in Connecticut, Colorado, and Washington!


FDA's decision on the approval of eteplirsen is 60 plus days past due. This is another unacceptable delay for patients living with Duchenne who don't have time to wait. Jett Foundation is continuing to work with FDA on this issue, and to expedite the approval of safe and potentially efficacious therapies for Duchenne.

How can you help? Donate today so that we may continue to fill the unmet needs of the Duchenne community through advocacy, adaptive activities and education.

Thank you to everyone for your support. 

Best, 
christine signature
Christine McSherry, Jett's Mom
Executive Director, Jett Foundation


Camp Promise-Rockies
Jett Foundation's Camp Promise-Rockies was an incredibly fun week!  Full of ziplines, belly flop contests, casino night, talent shows, fishing and promposals!


Check out our Camp Promise-Rockies Facebook page
Jett Ride 2016
JettRide 2016 Bike Tour - 500 miles!
The 2016 JettRiders have completed their 500 mile bike tour. Thank you Ashley, Emily and Jack for "Going the Distance".  Together the JettRide raised $26,000 for Duchenne. Do you know a teen who would like to join our JettRide team next summer? Email Michelle
For more info go to our JettRide website
Tri For Jett 2016
Many thanks to all who made our 2016 Tri4Jett team a success!  So far the team has raised $17,000 with checks still coming!  A huge thank you to our lead sponsor -  The Goodale Company and Granite City Electric Charitable Foundation. Many thanks to our athletes who put their muscles to use for those who can't.
Gals for Cal 2016 Triathlon
On September 11, 2016 in Hopkinton, MA, the Gals for Cal will once again swim, bike and run for Duchenne.  Please consider joining this incredible group of women or support their efforts.  Please visit their website to learn more.

Jett Foundation Regional Roundtables

Our Regional Roundtable program continues to be a great resource to families and caregivers. Many families have told us these meetings are incredibly helpful as they navigate the often confusing landscape of clinical trial options. Our next Roundtable is scheduled for August 27th in Lafayette, Louisiana. 
Click here for more info and to register
Duchenne Day with the
New England Patriots
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We are so grateful to the New England Charitable Foundation for giving our families a gift of a lifetime - a day up close and personal with our favorite patriots!
Click here to see more pictures
Save the Date - Friday October 14th in Plymouth
Komedy for a Kause
to benefit Jett Foundation

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Industry Partner News
The Jett Foundation collaborates with many industry partners who are working towards potential treatments for Duchenne.  Read more about their recent updates below.  For additional information on Duchenne clinical trials go to Clinicaltrials.gov

Catabasis Pharmaceuticals Quarterly MoveDMD newsletter.  If you have questions about Catabasis duchenne programs go to:  https:// clinicaltrials.gov/ct2/show/NCT02439216?term=catabasis&rank=3   
PTC Therapeutics  announced global regulatory updates on Translarna™ (ataluren) for the treatment of nonsense mutation Duchenne muscular dystrophy (nmDMD) and nonsense mutation cystic fibrosis (nmCF).  If you have any questions for PTC go to:  https://clinicaltrials.gov/ct2/show/NCT02369731?term=PTC+duchenne&rank=12 
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